August 28, 2014

On Sunday or Monday as I was reviewing the upcoming week I boldly made the statement it would be a quiet week and our first week in a very long time when we didn't need to visit Children's Hospital. You might think by now I would have actually learned my lesson to not say anything out loud. But, not really.

Tuesday Addison actually had a comparatively good visit with Miss Trudy. I say comparatively because it was the first time since July when he actually did anything which resembled therapy. He has been increasingly weaker every week since he began prednisone and in the last few weeks has been pretty much a rag doll unable to support his own weight even to sit most of the time. We discussed whether it would be helpful to try his spio, which is kind of like a girdle to help him with muscle support. We have not been using the spio since he went to the hospital because it seemed like too much for him. Trudy taped his spine with Kenisio tape to give him some support and awareness. The difference in his posture and strength was very impressive. He was rather alert and responsive for the better part of an hour while she was here and if my memory serves me correctly, he didn't even cry.

Since July 14th Addison's neurologists have been ordering an MRI to rule out any issues within the brain which could be causing seizures. They are looking specifically for signs of brain injury, stroke, lesions, or tumors. Three times they sent the order to the scheduling department and three times it got lost in the shuffle. If you have had any experience with CNMC this just does not happen. The place truly runs like the most efficient well oiled machine I have ever encountered. Which makes it curious why the Lord kept holding it off.

On August 18th when we saw the neurologist he had his nurse look into it. She was sure it must be our insurance company holding it up. But when she spoke to our insurance company they confirmed they had already approved the procedure and the sedation. Hmmm.

The next day the procedure was scheduled for September 4th at the outpatient clinic closer to our home.

Tuesday afternoon I got a call from the hospital. There was some flooding at the facility and they had to move us to the main hospital in DC. We figured since they were combining two facilities it would be weeks or even another month before we could get the MRI but in fact we were told to bring him on Thursday.

This actually upset the girls a lot. Emma, in particular, felt that if we couldn't get on the schedule for so long and now we got on in two days it must be bad news. And to be honest it took me a few minutes to argue that logic. But the fact is, God works in many ways and the verdict is still out as to whether this is a step forward or a set back.

So we changed gears. Allen rearranged his travel schedule and we prepared to go to DC. And then things got really chaotic.

Because Addison had to be sedated for the procedure, his MRI was treated as a surgical procedure. When we were doing his pre-op work it came out that the tube they implanted in his left ear is metal. You might remember his left ear is so tiny the surgeon had to use a special tube instead of the standard plastic model. The problem is the magnetic field used in an MRI can rip metal from the body.

Wednesday was a day full of phone calls, emails and texts as everyone tried to determine if he could even have the procedure done. This seriously brought about a lot of uncertainties about whether or not this was God's way of saying we shouldn't have the test. A call to the ENT determined what tube was used. That tube was not on the MRI approved implants. So then it was a call to the manufacturer to find out what was in the implant. Once we knew it was all stainless steel and the MRI team knew it was safe for the procedure they had to go through the process of having it added to the approved implant list. Finally, at close of business last night we had clearance.

So traffic was horrible today. We left our house at 8:00 and ended up being a few minutes late for our 10:00 appointment. Fortunately, they had built an extra hour in the schedule to allow for pre-op paper work and IV's and all that jazz.

One big blessing was Addison's IV. He has such painfully weak veins. I have seen techs and nurses work on him for up to 90 minutes to get a line in or draw blood. On his last visit to have labs drawn they said they could not do it. I was concerned about whether or not this would be an issue. When the pre-op nurse asked about his veins she said be prepared he will have multiple sticks. I asked God to help them get the line in quickly. One of the first things she told us when we went back to him was that the anesthesiologist decided to do the IV himself and he got it in on the first try! Huge answer to prayer. I only wish I had his lab slip with me so they could have drawn his tests at the same time.

As far as the procedure itself, Addison did great. He was under just about 90 minutes. He needed a little bit of oxygen but not a big deal. Unfortunately, our head neurologist was not in today so we could not get the reading. We were trying to coordinate with another neurologist we work closely with but she didn't get out of ICU until late tonight. It would be nice to get results tomorrow. With the holiday weekend I am guessing it will most likely be at least Tuesday.

And then there is surgery.

While I was contacting the ENT in DC to find out about the tube, I got a call from Addison's surgeon in Connecticut.

Since Addison was born, we have been struggling to find the source of his swallowing issues. And I know I keep promising a post with real information. And I will... someday. Because it is important. And I believe it could be helpful to others out there. But it is too involved a topic for this post. The bottom line is that in June we finally got a diagnosis of a severe posterior tongue tie and a moderate lip tie.

Unfortunately, we had to go all the way to Connecticut to find this answer. This is a very simple office procedure on a new born but requires full sedation in an OR for someone Addison's age. And there are very few doctors who can perform the exact procedure Addison needs. The nearest one is in Connecticut. Fortunately, God led us to him and he is considered to be exceptional. He arranged to meet us in between surgeries so we did not have to make another trip to Connecticut for a consult. He immediately scheduled Addison for his first available opening which was exactly one month from our consultation in June. Unfortunately, that surgery was scheduled for exactly 3 days after Addison was hospitalized and his neurologists felt it would be unsafe to undergo surgery. We had to cancel the procedure.

When Addison initially began weaning from the meds in July his neurologist said he would clear Addison for surgery as soon as he was off the medications and he would defer to the surgeon and anesthesiologist as to when it would be safe to have the procedure after that. In the meantime, this issue has made it extremely difficult for Addison to get his necessary medications. Furthermore, it also adds complications to things like being sedated because his tongue is tied in such a way it causes blockage in his throat. Fortunately, he came through sedation like a pro. When the neurologist gave us clearance we conferred with the surgical team who said they would clear him for September and put him on the schedule for the 4th.

Yeah! Or so we thought. The next day the neurologist called to say Addison had to start a new trial of prednisone at double the dose. We called to cancel the surgery. Or so we thought, again.

Which brings us back to Wednesday. The pre-op nurse in Connecticut called to get things set up for Addison's surgery next week. I explained we had called to cancel and went through the whole bit. She said she was going to check with the surgeon and get back to us.

I had a few hours to toss things around. Did the MRI being moved from the 4th and the surgery not being removed from the schedule mean we were supposed to go for surgery or was there something else happening that we should be considering. I finally settled in my mind that it was a mute point because surely they were going to cancel the surgery, again. But when the surgeon called later in the day he said because Addison would be down to just one dose a day and only 2 days away from his final dose he felt it would be safe to operate. However, he wanted to talk with his team and get clearance from the anesthesiologist.

Today while Addison was having his MRI the surgeon called from Connecticut to tell us Addison was fully cleared on their end pending receipt of a letter from the neurologist giving approval. We have contacted his neurologists and are awaiting their answer on this front. Because of the increased risk of infection and slowed healing process we have questions as to whether or not the timing is good for surgery. However, we would be so relieved to at last have this issue fixed so our fellow can commence with eating and speech therapy. We are specifically praying if it is God's will the neurologists give clearance and if it is not God's will then they will not approve the surgery.

In other news, today Addison moved down to just two doses of meds a day. Yeah!!! Just 10 days to go. So happy.

And that is the long and the short of it. I wish I could say something inspirational or witty or even intelligible right now. But I am just tired. I don't mean sleepy. I just mean tired.

Thank you again for your words of encouragement and most of all your prayers. Kaitlin created a chain in our dining room with all the families and churches who have told us they are praying for Addison. The kids said there are more than a hundred links. Gratitude is too small a word for what we feel.

Kathleen Wachter

Most of all I am a Christian, wife and home school mom to nine. Here you will find snippets from my life, recipes, tips for child rearing, home schooling advice and moments from our journey with down syndrome.